Scleroderma and colostomy

[Lyndabickley]

I have had problems with my bowels for 10 years now and my consultant and GP both suggest I consider a colostomy, which they say transforms the lives of their scleroderma patients. Has anyone experience, (bad or good) they are willing to share about living with scleroderma, Raynauds and a colostomy.

[judyt]

I have asked just this same question but received no answers. Just where those Sclero sufferers are I would love to know. I am managing well enough at the moment but i have times when I feel I can't stand it another day longer. I will watch out for any responses and keep fingers crossed that some day some one will be in touch.

[Lyndabickley in reply to judyt]

Yes. I know how you feel. On a good day I think I could cope but there are some really bad days too. Watch this space!

[steph6]

Hello all I am new here.

Although I was only diagnosed with Scleroderma and Raynaud's in 2013. I had Raynaud's as far back as 10 years, feel that I have Scleroderma for longer than the specialist say. I have Oesophagus, Lung, Heart, Hands, Feet, Face, Arthritis and other niggle symptoms. At the moment I suffer off and on with constipation but I feel not enough to need any intervention. But back in 2007 I was rushed into hospital with Peritonitis and a burst bowel. I am now wondering if this had anything to do with my Scleroderma, at the time they said it was diverticulitis. They operated and I ended up with a colostomy, [which a year later they reversed]. At first I was just glad to be still alive, but after the initial shock I became very self-conscious and different. At the time I was 43 and single, and couldn't wait to have it reversed. I found the managing of the colostomy easy after a very short while. I would probably view things differently now I'm older in a stable relationship and having Scleroderma has made being as well and comfortable as possible a big priority.

I think if I were in your, or ever find myself in your situation, Firstly, I would consider how badly my bowel problems effect my day to day living and my state of mind. I would consider my age and my family relationships. I would also consider how I would feel with a colostomy, personally I would still feel self-conscious, I am probably quite a vain person though, but everyone is different and this decision is not an easy one, and would have to be your own.

This was probably not much help.

I hope that all goes well and wish you the best.

[Lyndabickley in reply to steph6]

Thanks. It is a difficult decision as sometimes I'm OK but mostly I am immobilised or in considerable discomfort for part of the day. I wonder whether I would feel the same with a colostomy. I know they can be irrigated each day and perhaps that is the answer, but the raynauds and scleroderma also affect the stool which is often soft or fluid so would the colostomy be constantly working. It is the internal anal sphincter which does not work so I do have a little control at present with the external sphincter, sometimes enough to get to a toilet and usually if I limit mobility or standing for too long I can manage. I also use a fair amount of codeine, especially if I need to travel. I have some wash out equipment if necessary.

[Gillg]

Hi. I've suffered with raynauds and scleroderma for the past 20 years or so. I got to a point where my life revolved around feeling so bloated I couldn't eat or spending days in the loo. My life came to a halt I couldn't commit to going anywhere. Then in Dec 2013 I had an ileostomy I felt that a colonoscopy would not solve the problem as food would still be stuck. It has changed my life I go out to the theatre visit friends and go on holiday. It hasn't been without its problems as I was so poorly by the time someone agreed to do something but I don't regret it for a minute. Good luck with your decision

[Lyndabickley in reply to Gillg]

Thanks. An oliostomy is an even bigger decision, but it's good to hear that it has transformed your life. I would find it helpful to be able to get around more. When I go out with friends or my husband I often find myself sitting in a coffee bar whilst they do the sight seeing!

[Bracey_Jane]

I was diagnosed with scleroderma 22 years ago, but I have a very mild case. I am now considered to have UCD (undifferentiated connective tissue disorder), CREST, Primary Biliary Cirrhosis, Reynauds, Sicca, Xerostoma, and I am losing all of my teeth due to root resorption and my mouth is shrinking rapidly. However, I still manage to live a full, active, and enriched life most days. I also suffered with fecal incontinence for 10 years that progressively worsened until it made leaving my home and bathroom very difficult. My incontinence was attributed to nerve damage and impaired sphincter resulting from a difficult child birth about 30 years before. Later, my gastroenterologist suggested that scleroderma may have also played a role. In order to preserve my health and stop having chronic Urinary Tract Infections, and to enable me to resume my social life and continue practicing my profession, I opted for a colostomy. I am now 67 years old and that decision was made almost 6 years ago. I am fortunate to be able to irrigate after about 6 weeks of healing time. During that period I was able to use flushable liners that fit inside the ostomy pouches, which were flesh colored and smaller sized so they did not interfere with movement of my leg. That made it very easy to hide and I was also able to reduce expense using the flushable liners. Once I trained my bowels, I usually irrigate once a day in the morning. I wear a small pouch called a stoma cap. It is flesh colored, round, about 4" in diameter, and hugs my body. There is a special adhesive all around the circumference that forms a seal. There is also a vent with a charcoal filter so gas can escape, but there is no odor. Since my stool varies from runny to solid and hard on any given day, I can go back to a more conventional pouch whenever I need to or I want the extra security. If my stools are too runny, I use a small dose of Citrocel ( fiber) to firm things up a little. I rarely think about the colostomy. My only regret is that I didn't have it sooner. It gave me my life back. I named my stoma Libby, (short for liberator) so when I need to let my husband know that I need to get to a bathroom fast, I just smile and say, "Libby needs a little attention." I am happy to answer any questions you may have from this group. It was a very difficult decision to make, but I want you to know that I am happy, positive, swim often, sit in a hot tub often, water ski, and any thing else I used to do. I also look and feel sexier than any other grandmother I know. A stoma cap does not detract from my appearance or my attitude!

[Lyndabickley in reply to Bracey_Jane]

Thank you so much for such a positive outlook. I do think it would help me and knowing how you can manage variable stools is really helpful. I will give it careful though as I would like my life back too.

[beesmum in reply to Bracey_Jane]

I'm wondering if you are still on this forum? Your post is 4 yrs old.

I'm borderlne limited scleroderma & have terrible issues with my bowel, limiting my life drastically.

I've begged to discuss ileostomy, no gastroenterologist or colorectal surgeon will even discuss it, at all, I despair. My rheumatologist says an ileostomy will be fine as I'm so borderline.

Any comment gratefully received.

Best wishes.

[Bracey_Jane in reply to beesmum]

Hi Beesmum, I have not been on in quite a while because what can be done is being done. I had a colostomy almost 10 years ago after about 10 years of fecal incontinence. I have limited scleroderma and an impaired sphincter identified as causes. I had recurring UTIs, scars from incontinence, and as many as 15 bowel “accidents” a day. The personal toll was nearly unbearable. My doctors at Duke medical center were concerned about the dangers of so many UTIs After many attempts to manage all this, including biofeedback, my doctors all agreed that a colostomy was my only option. I have not regretted having the surgery. It gave me a quality life again. I do irrigate, usually daily,, and it takes about an hour each time. They left most of my colon intact to allow me to absorb as much nutrition as possible. My gastroenterologist is Dr. Shimpi and my surgeon was Dr. Julie Thacker. It is inconvenient and time-consuming, but it has allowed me to have a social life and participate in activities with a degree of confidence. The most difficult situation to manage has been overnight travel since there is equipment and supplies involved and some hotel bathrooms are difficult to manage, but we purchased a small motor home for overnight travel. This allows me to have all needed equipment and supplies readily available and a private bathroom to take care of my personal needs. I wish you all the best. If you should need to contact me again, please email me. I no longer monitor online support groups often since I am now busy enjoying my life.

[beesmum in reply to Bracey_Jane]

Thank you for your response, so pleased you are able to live your life again. It's good to know your colostomy was successful.

I notice you are in the US, I'm in the UK. Having trials for Sacral Nerve Stimulation currently in Oxford, some success, hoping it continues.

Sorry unable to email, I don't have your address. Not sure it's a good idea to publish them on public forum posts.

Good luck & thanks again for getting in touch, I do appreciate it.

[mainbunny]

Hi Lyndabickley, sorry for the late reply, my wife who has Limited Scl. had suffered with abdominal pain for around eight years and given meds to stop cramping etc. they thought it was IBS. She was in extreme pain one night and collapsed, rushed to hospital, had her large bowel removed which had completed died, (it was black apparently),and was put in an induced coma for three days in ITU. She very nearly didn't make it. She now wears a colostomy bag which she gets on well with though it may be reversible in the near future. The point I'm making, this went undiagnosed for all this time, if both your GP and consultant suggest a colostomy/ileostomy I would seriously think about taking their advice, could be a ticking time bomb ready to catch you out. If you want to ask me any questions please do. I hope you make the right decision anyway.....Colin.

[Lyndabickley in reply to mainbunny]

Hi Colin

Thanks for the warning and for sharing your wife's experiences. I do hope she is well now. I have had colonoscopy and my bowel itself, although affected by the Raynauds and scleroderma is fairly healthy. My problem is that the main controlling internal sphincter does not work. I have a neurosacral stimulator which has helped me control the external sphincter better but I am still unable to mobilise well without a potential accident! I therefore do have the choice, unlike your wife, to continue managing with washouts and codeine and staying fairly immobile but it does stop me doing so much and of course there is the general risk of limited mobility. I have found the conversations on this blog really helpful.

[kimmo]

Hello Linda. I have not been on the site for some time and I recently read your post. In 2010 my partner saved my life, literally. I had been rushed into hospital at 8pm, having had no previous symptoms, and it took 9 hours to assemble a team to operate. My partner noticed septacaemia moving up my arms and all hell let loose. The scleroderma had masked my symptoms during an MRI scan and they operated not knowing what they would find. That was at 5.30 am. Three times the surgeon came to tell my partner I wouldn't make it. To their utmost surprise I remained on a ventilator and in ICU for 8 days and spending one month in hospital. The rheumatology team took over my treatment for the final two weeks when my medication was completely changed.I also had six weeks of chemo after the op and am taking immunosuppresant meds for the rest of my life. I have had diffused scleroderma for over 20 years but now have lots of secondary conditions too. As far as my ileostomy is concerned it is simple. Without that I would not be here today. My personal advice to you, if you not already done it, is to go ahead with the op. My colon and large intestine had necrotized and from what little I can remember, I would not recommend anyone to put themselves through the horrendous pain and symptoms. I am one of the lucky ones as there was only an inch left for my stoma. I have been given a second chance but would say that initially you feel wonderful but when realty sets in, and your femininity is questionable, then there are dark days to follow. However, there is always light at the end of the tunnel if you look hard enough! Not sure if this will be of any help but my thoughts are with you.

Regards,

Kim